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guitarpicker37

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guitarpicker37 Newbie
guitarpicker37
Posted

I've been reading everything that everyone has to write and it has been so helpful...My 5 year old son started developing ataxia in February of this year and has gotten much worse...We started seeing a neurologist in March to which, after an MRI of his brain, they found "white matter" in his cerebellum. His neurologist was pretty quick to lean towards ALD (adrenoleukodystrophy) and ordered a whole lot of blood tests, to which all came back negative for the "big" diseases...We were also seeing a GI doctor who ordered the "celiac panel" blood test, yet again another negative result...I pushed for him to give him the endoscopy last week and on Monday he called me to tell me that the biopsies were negative but the was an abnormality in the scope but he was quick to rule out celiac... He said there was no way possible of this being celiac!!! Please tell me what you all think about my little guy's symptoms:

1) had severe colic as a baby

2)projectile vomitted until about 2 years old

3)started throwing up since then from time to time grayish matter

4)complains of tummy aches especially after any kind of pastas

5)been at 36 pounds for the last year and is in the lower 25% for his age group

6)rash on buttocks from time to time (dermititus herpiformitis?)

7)foul smelling hard, large, and light colored stools

8)constipation all his life until last month when his GI doc put him on Glycolax powder (now he poops everyday!!!!YEAH!!!

9)of course, as I've mentioned, white matter in the brain

10) and the severe gait instability

As of Monday I put him on a gluten free diet and I hope he gets better...I've been taking everyone's advice on this website and I'd rather trust experience over education any day...Thanks in advance for any insight that anyone has for me..As you all probably know, this little angel is my world and it kills me to see him struggling walking while the doctors try to look through their manuels to try to come up with something while ignoring the sympthoms that he has....thanks again, Terry

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darlindeb25 Collaborator
darlindeb25
Posted

Terry, a gluten free diet can not hurt him and you may just be surprised at the results. I think you are on the right track. Good luck!

RiceGuy Collaborator
RiceGuy
Posted

The colic reminds me of candida, and I believe the abnormal gait suggests B12/magnesium deficiency. Still, a gluten-free diet may indeed be just what he needs. Time will tell I'm sure. Do keep us posted!

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      Son's legs shaking

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